Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients

ObjectiveWe aimed to enhance person-centered care for primary ovarian insufficiency (POI) by co-creating patient-facing educational materials (PEM) with patients. We then evaluated understandability, actionability, and acceptability of the co-created PEM.DesignHealthcare professionals spanning repro...

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Main Authors: Elizabeth S. Blocker, Isabella R. McDonald, Elizabeth A. Weyman, Dana L. Jarvis, Joni Bryce, Corrine K. Welt, Andrew A. Dwyer
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-07-01
Series:Frontiers in Communication
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Online Access:https://www.frontiersin.org/articles/10.3389/fcomm.2025.1509966/full
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author Elizabeth S. Blocker
Isabella R. McDonald
Elizabeth A. Weyman
Dana L. Jarvis
Joni Bryce
Corrine K. Welt
Corrine K. Welt
Andrew A. Dwyer
Andrew A. Dwyer
author_facet Elizabeth S. Blocker
Isabella R. McDonald
Elizabeth A. Weyman
Dana L. Jarvis
Joni Bryce
Corrine K. Welt
Corrine K. Welt
Andrew A. Dwyer
Andrew A. Dwyer
author_sort Elizabeth S. Blocker
collection DOAJ
description ObjectiveWe aimed to enhance person-centered care for primary ovarian insufficiency (POI) by co-creating patient-facing educational materials (PEM) with patients. We then evaluated understandability, actionability, and acceptability of the co-created PEM.DesignHealthcare professionals spanning reproductive endocrinology, nursing, and genetic counseling partnered with patients to co-create PEM using the iterative ‘design thinking’ (human-centered design) process. Validated algorithms (n = 8) were employed to determine PEM readability prior to evaluation. Individuals with POI were recruited from patient organizations to complete the online evaluation of PEM. Participants completed health literacy/numeracy instruments, Patient Education Materials Assessment Tool for print materials (PEMAT-P), and provided open-ended qualitative feedback. Scores >80% in PEMAT-P domains were considered ‘high quality’.ResultsCo-creation involved three iterative rounds of development. Readability algorithms indicated PEM were ‘fairly easy to read’ for 11- to 13-year-olds (i.e., 7th grade reading level). Thirty patients completed the online evaluation (36.9 ± 6.4 years-old). All PEMAT-P domains exceeded the ‘high quality’ threshold: content (82%), word choice/style (89%), use of numbers (91%), organization (93%), layout/design (90%), use of visual aids (83%), and actionability (85%). PEMAT-P scores neither differed according to educational attainment (p = 0.94) nor health literacy/numeracy (p = 0.61). Qualitative feedback informed further PEM refinement prior to widespread dissemination and clinical use.ConclusionEngaging patients with POI in co-creation produced PEM that were acceptable, understandable, and actionable. Co-creation is a low-cost engagement process supporting person-centered care. The process described herein may serve as a “roadmap” guiding PEM development for other reproductive conditions.
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spelling doaj-art-811a803604e948ba8a9cadffc31fd8f52025-07-29T05:20:46ZengFrontiers Media S.A.Frontiers in Communication2297-900X2025-07-011010.3389/fcomm.2025.15099661509966Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patientsElizabeth S. Blocker0Isabella R. McDonald1Elizabeth A. Weyman2Dana L. Jarvis3Joni Bryce4Corrine K. Welt5Corrine K. Welt6Andrew A. Dwyer7Andrew A. Dwyer8Boston College, William F. Connell School of Nursing, Chestnut Hill, MA, United StatesBoston College, William F. Connell School of Nursing, Chestnut Hill, MA, United StatesBoston College, William F. Connell School of Nursing, Chestnut Hill, MA, United StatesP50 Massachusetts General Hospital – Harvard Center for Reproductive Medicine Patient Advocacy Group, Boston, MA, United StatesP50 Massachusetts General Hospital – Harvard Center for Reproductive Medicine Patient Advocacy Group, Boston, MA, United StatesP50 Massachusetts General Hospital – Harvard Center for Reproductive Medicine, Boston, MA, United StatesDivision of Endocrinology, Metabolism & Diabetes, University of Utah, Salt Lake City, UT, United StatesBoston College, William F. Connell School of Nursing, Chestnut Hill, MA, United StatesP50 Massachusetts General Hospital – Harvard Center for Reproductive Medicine, Boston, MA, United StatesObjectiveWe aimed to enhance person-centered care for primary ovarian insufficiency (POI) by co-creating patient-facing educational materials (PEM) with patients. We then evaluated understandability, actionability, and acceptability of the co-created PEM.DesignHealthcare professionals spanning reproductive endocrinology, nursing, and genetic counseling partnered with patients to co-create PEM using the iterative ‘design thinking’ (human-centered design) process. Validated algorithms (n = 8) were employed to determine PEM readability prior to evaluation. Individuals with POI were recruited from patient organizations to complete the online evaluation of PEM. Participants completed health literacy/numeracy instruments, Patient Education Materials Assessment Tool for print materials (PEMAT-P), and provided open-ended qualitative feedback. Scores >80% in PEMAT-P domains were considered ‘high quality’.ResultsCo-creation involved three iterative rounds of development. Readability algorithms indicated PEM were ‘fairly easy to read’ for 11- to 13-year-olds (i.e., 7th grade reading level). Thirty patients completed the online evaluation (36.9 ± 6.4 years-old). All PEMAT-P domains exceeded the ‘high quality’ threshold: content (82%), word choice/style (89%), use of numbers (91%), organization (93%), layout/design (90%), use of visual aids (83%), and actionability (85%). PEMAT-P scores neither differed according to educational attainment (p = 0.94) nor health literacy/numeracy (p = 0.61). Qualitative feedback informed further PEM refinement prior to widespread dissemination and clinical use.ConclusionEngaging patients with POI in co-creation produced PEM that were acceptable, understandable, and actionable. Co-creation is a low-cost engagement process supporting person-centered care. The process described herein may serve as a “roadmap” guiding PEM development for other reproductive conditions.https://www.frontiersin.org/articles/10.3389/fcomm.2025.1509966/fulldesign thinkinginfertilityprimary ovarian insufficiencypatient educationhealth related quality of life
spellingShingle Elizabeth S. Blocker
Isabella R. McDonald
Elizabeth A. Weyman
Dana L. Jarvis
Joni Bryce
Corrine K. Welt
Corrine K. Welt
Andrew A. Dwyer
Andrew A. Dwyer
Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients
Frontiers in Communication
design thinking
infertility
primary ovarian insufficiency
patient education
health related quality of life
title Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients
title_full Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients
title_fullStr Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients
title_full_unstemmed Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients
title_short Person centered care for primary ovarian insufficiency: developing and testing patient-facing materials co-created with patients
title_sort person centered care for primary ovarian insufficiency developing and testing patient facing materials co created with patients
topic design thinking
infertility
primary ovarian insufficiency
patient education
health related quality of life
url https://www.frontiersin.org/articles/10.3389/fcomm.2025.1509966/full
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